Procedure Day

Asleep, clutching her new Troll doll that has been such a comfort this week

Lucy was able to get her procedures done this morning at 7 am - it was an early day for all of us!  Here is what we found out:

- Upper Endoscopy:

  - Her esophagus was nice and open and didn't need a dilation - YAY - it's been 18 months since her last one, so that's awesome

  - The scope showed no visible signs of tears or ulcers, so the blood presence in her stool, vomit and low hemoglobin are still a mystery.  We will continue to monitor her blood numbers over the next few weeks and also hope that her new supplement helps keep the throwing up at bay.


 - Broncoscopy:

 - The pulmonologist came out to the waiting room and said, "Your daughter's anatomy is very interesting..." We have heard that before about her heart - things are just a little differently placed in Lucy than in many other people.

 - A typical trachea branches into a "V" at go to each lung.  Lucy's is more like a "U" and has a small pouch at the place where the trachea branches out.  This means secretions, mucus, bacteria, etc. could be hanging out there and continuously infecting her lungs.  This is very atypical anatomy so our doctor needs to review the pictures with colleagues to determine best next steps.  It could have been formed when her initial repair was done, or slowly developed over time.

 - Her Trachea towards the bottom is not staying open properly when breathing and coughing, making it VERY difficult to fully clear her airways, again allowing bacteria and mucous to hang out and leading to frequent lung infections.  We will be taking home some new medicine and breathing treatments to hopefully help this.

So, we have some answers and feel very grateful that we were able to get these procedures done and have so much information.  Next steps are still a little hazy, so praying for wisdom for all involved to make the right decisions for Lucy's long-term health.

Lucy had a good day after she recovered from anesthesia...waking up was a little rough, but once we got to the room and was able to eat, she was much happier.  She is back on a little bit of oxygen after all that lung scoping, but hoping overnight / tomorrow that isn't required.  She got some mail today and fun homemade cards that we hung up in her room to liven it up a little - it really cheered her up!

...a note about the picture at the top of this page.  Lucy was given this Troll doll when we first arrived at the ER (Guy Diamond is his name if you don't know the Trolls movie).  He has been present for every procedure she's had and even came down to surgery with us this morning.  I brought some of her favorite Stuffed Animals from home but she ONLY wants Guy Diamond...it's very sweet and I'm happy she has found something to cling to when she's frightened.  She's never been a kid who has a special blanket or animal so it's nice to see she can find comfort in a small gift like that now.

THANK YOU all for your thoughts and prayers.  We feel them.  We appreciate you all.  We are all mentally exhausted after a L-O-N-G week here at the hospital and are ready to be together as a family to celebrate what is left of the Christmas season!